Good Practice in Mental Health -
Presentation to Highland Primary Care NHS Trust, December 2000

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Hello,

I am never going to go over a weekend when I am meant to be making a presentation, without having it ready prepared and with a clear idea of what I want to say.

Every so often this weekend I would get distracted and go off into a muse about what might be useful for you to hear from someone like me, and as I was wondering away, the food would think of burning or my son would ask me to pay attention and back I would go to being at home again.

I seem to have a very wide remit, 'Good Practice', so I am going to go along and see where I end up. I can't imagine that what I will say to you will be new or news, but maybe it will encourage some discussion. You are all experts in what you do and in my own unqualified way I too am an expert. I am an expert in gaining the views of users and trying to turn their collective wishes into reality.

Recently in HUG we held our own review of where we had got to and where we were going to in the future. I thought I knew roughly what sort of views people would have about us, and to a large extent I did, but in many ways I didn't.

A large number of our members saw HUG as a place of therapy, a safe place to talk over issues. This is something that we have never set out to be or thought that we provided, and a large number of people wanted the future work of HUG to be based around setting up buddying schemes and peer support in the community.

I had not anticipated any of this really and I suppose that is my point. I can have clear ideas as an expert in what I do about my work, but equally the people I work with, my clients may have very different ideas and perceptions.

What I hope to provide today is the views of someone who is not an expert, someone who may have missed the point entirely, but equally someone to whom it is sometimes useful to listen to even if only to confirm what you already know.

I will give an overview first, a sort of predictable view that I hope most of you are aware of.

In HUG we talk, and we talk about those things that will make our lives better and we try to turn these thoughts into reports that, whilst sometimes negative about our experiences, try to give constructive ideas about what would make life better. We have written about Employment, Medication, Ward Rounds and Crisis Services, a raft of general issues, The Mental Health Act and Suicide. These reports could not claim to be pure research, but they give a snap shot into our lives and involve anything from 50 - 100 members.

When you look at your involvement in planning services I would hope that you would see them as essential tools in what you do. If any of you have not seen them then please let me know and I will let you have them.

To give a thirty second snapshot into four years work, some of the key issues that people experience and want to change, are access to services when people feel that they need them, both to crisis services and out of hours services.

We need to increase understanding of mental illness and to reduce stigma. We need to help some people who work in mental health to develop new attitudes. We need to increase the accessibility of the Benefits System and to ensure that people have good quality housing and the chance to feel usefully occupied and for those who can or wish to have the possibility of earning a wage.

With psychiatry, we need to see you when we feel vulnerable and afraid. We need to trust you as people because the burdens that we come to you with are delicate and dangerous. We need to know that we will get the help of experts and we need to know that there will be a degree of continuity, and that when we have built up trust and security, it will not be ripped away by people moving on, and we will not have to continually have to repeat our stories and the growing files on the desks about our care will result in useful actions and treatments.

In HUG we often casually talk about the people whose jobs it is to help us but we have never sat down seriously to work out what it is that we want from you. Because of this I am not going to give you a HUG view of best practice in psychiatry, but I will give you my feelings.

I have now been seeing doctors of one sort or another about my mental health for the last 16 years, and it is only this weekend that I have realised that my wishes and needs may have little to do with what you are actually employed to do, which is I assume, to alleviate or even cure people of mental illness.

You are all bound up with myths and stereotypes and strange perceptions that have a huge influence on what we expect from you.

When I first came into contact with psychiatry I had been reading books such as the Bell Jar, One Flew Over The Cookoos Nest, I Never Promised You a Rose Garden, Woman on The Edge of Time, different books by RD Laing, and although they are now even more out of date than they were then, they gave an impression that still holds today.

When I looked to people like you I had assumptions of power and control. I had the strong feeling that if you were ill that part of your role was to be elusive, to not participate to be picked apart and put back together again by people whose intelligence perception and humanity far outweighed anything I might have. These myths coloured my life they influenced how I acted with doctors and what I expected and wanted. In those years I was unhappy to an extent that I hope never to experience again it was much worse than when I have been psychotic.

I was growing up, I was meant to be intelligent, I was meant to be successful, to have relationships and friends and a future and I was bewildered because I had none of that. It was like living through cotton wool and everything felt at one step removed. I would wake in the morning and pray that I had the courage to kill myself and in the evening after too much to drink I would cut myself and for a brief moment feel glad that I had given expression and testimony to what I was going through.

I wanted at a basic level to be happy again, I wanted to see some meaning, I wanted friends, I wanted legitimacy for what I was experiencing I wanted it to be OK to be miserable and in those years what I wanted most of all was an answer. My writing and my drawings were all one long question mark they were a why is life like this, why am I like this.

When I am talking to people I often say that honesty is very important and yet honesty needs tact.

In those years my doctor tried to explain that I had a diagnosis of a personality disorder and that I would always feel the way I did and that this feeling of being in the worst of all possible worlds would always be with me, that it was a part of my character and something that I would have to grow to accept. It was well intentioned but it was so hard to cope with.

The sad thing is that I see so many people going through the same things nowadays. I needed to be able to blame something, I needed to stop feeling guilty, I needed answers, I needed to be needed and above all to feel hope.

The same doctor would ask me if I wanted to see a psychiatrist and I desperately wanted to. I saw people like you as my answer and salvation but I couldn't bring myself to agree. I couldn't take that step into a new world, a new identity and a new self-perception. So although we want to be partners in our care sometimes we want to be told to do things. Sometimes I have needed that nudge.

I came into proper contact with psychiatry when I was admitted to hospital and it is strange to think how recently it was, as that hospital was so abysmal. The psychiatrist that I saw there I have not met the like of since. I had to talk and I had to justify and I had to explain, and all he could do was say that I wasn't old enough to have such sad thoughts. I did not understand this at all, this belief that you can be so right about your opinions of other people.

I was referred for psychotherapy after this but no one ever told me that it was psychotherapy. I would turn up to the surgery, he would ask me how I was and would say that I was fine, and then we would just sit and sit in silence and my stomach would churn and my body would screw itself up in tension, and I would so much want to talk but I couldn't, I just couldn't.

I did not have any understanding of what was happening, but knew that going there I would be looking forwards to solutions and coming out I would feel sad and dirty. It is horrible to use bad practice when talking about good practice but it seems to me that from our mistakes we learn lessons for the future.

I will tell you a few more anecdotes. When I was psychotic later on, I saw a psychiatrist who both my wife and I really liked. He was a buzz of energy and he would zoom along the corridors. In the interview room he would ask questions and my wife would see me struggling to reply but because I was on 1000 milligrams of larganctil and I don't now how much haloperidol. It took me a long time and I could never get my answer out before he had moved to the next question. We sometime giggle about it because although I rarely managed to speak, he gave out warmth and respect and humanity.

I don't feel that to the psychiatrist who told me to just stop taking my drugs when I had complained about them yet again, and I don't feel it about the psychiatrist afterwards who denied that such a thing could possibly be said. I didn't like the chain of command, and this unseen, unknown person who said that psychology was not appropriate for me, and I feel totally bemused by the doctor who claimed that he had treated me for a number of weeks in the locked ward, and said I must have been too ill to realise it.

They were all doctors who had lost their way, who had forgotten the trust and the essential humanity they have above everything else to give to us. For them professionalism, boundaries and bureaucracies were the mask they used to avoid participating in our lives, just as we have our mask of illness and normality to seal ourselves off from other people.

This would be all right if psychiatry was just about illness and drugs but it is not, it is about relationships and warmth and belief too.

I am not very interested in why I go through the things that I do anymore. I have a need for security and safety and the knowledge that I can get help if I need it. I see my psychiatrist and my CPN and used to see my psychologist and there is no fault that I can find. All of them let their warmth and humanity shine through. They are informal and relaxing and open and they give me information when I ask for it.

They help me come to decisions about my treatment they give me hints and skills for my life and they treat me as an equal which is wonderful. When I leave the room and I am given the chance to get in touch if things go wrong, I feel a huge sense of relief.

But getting back to it -

A doctor once, when I was in despair, said that he could imagine me living in some rose covered cottage in the countryside one day, and I almost do. We live in a nice house we have a big garden with cherry trees and apple trees with clematis and yes rose bushes.

For me I feel happy for a lot of the time. I have some symptoms of illness but my life is busy and productive. I have money and food and warmth and friends. I am nice and easy to deal with because we can concentrate on illness but as you all know, life is not usually this easy. I need help when I am feeling sad and unhappy, when life is confusing and bitter and that I expect is where your jobs become confusing.

A large number of the members of HUG come to you because life is unbearable, when there may be mental illness, but there is also too little money, and the house is horrible or non existent and the children are in care or there is no-one for miles to talk to.

You may have the back up of Community Mental Health Teams of Social Workers and Housing Workers and Support Workers and you may all be experts in your fields, but I feel that my cry over the years has been for an acceptable life, a happy life, a place of peace and contentment and sometimes I think that I have found it but I still yearn,

I still say take away the pain that I never expected, give me confidence and belief and happiness. I know that you are not the solution to my pains but I still ask for it from you, as do many of the members of HUG because sometimes there is no where else to turn to.

I will finish on the competing confusing demands that we all make of each other and the times when stereotypes and expectations make good practice so hard to achieve.

In HUG we are about to start writing up our report on Admission to Hospital and in the hospital a sub-group of the Adult Services Group has just finished a draft admissions policy. The admissions policy makes for very sensible and rational reading, basically saying that a psychiatric hospital is there to treat people with a mental illness.

In HUG when we talked about this, hospital was indeed a place to help those who are mentally ill, but the language we used was that it was a place to go when you could no longer cope.

In the words of one member "when you have been baling out the boat for so long but now the water is coming over the sides," it is when you have become too much of a burden on your friends and relatives. It is for when you are desperate and prison and the streets loom. It is for when life is so hard that you need a break, some peace and security.

For me best practice is understanding each other, knowing what we want and what we have a right to want. It is toning down the confrontational, best practice is when we feel that we are all working towards the same goal, that we don't have to fight or resent the help that we may get.

It is having a system that we can all fit into - most especially it is a way of creating systems and treatments that allow our individuality and humanity to shine through, because what helps me may not help another person, the person that I trust and have faith in may not be the same person for someone else.